Sorry....here's an update

I wish I had some news. We did see Haleys doctor that friday but just talked about things we already knew and went over a few things like if we were willing to travel. We chatted about how if we did choose surgery and it didnt work we could go back and reopen the holes, we could take her off bypass while in the OR and test her pressures, or we could leave her chest open for a few days after surgery to make sure all is going well. But a HUGE issue of surgery is the anesthesia, and the longer she is on bypass the more inflammation, which is not at all helpful. Doctor says the surgery itself is not complex but we need someone to get in and get out and do it as perfectly as possible.
I am trying to rewrite this from notes I took which are kind of mixed up and crazy. our appt was really us sitting in the waiting room with the doctor after hours, so very informal and us really just chatting.  Click read more to read the rest of this post...:-)

Ok so Surgery is basically our only chance to change the path Haley is on. The hard part is that could be for the best meaning her holes would be closed and her pressures while still being higher then normal she would be able to resume normal activity, I am not sure for how long though. Hopefully longer then we have now. OR the other way is changed for the worst and she is ill, struggling to breathe and her activity is lowered to wheel chair bound.
But on the other hand not doing surgery, the holes prevent her right ventricle from failing as quickly because they act as a pop off. Which may help in the long run.... unless surgery closes the holes and lowers her pressures. which we wont know until after. But we know if we dont do anything her "PH will be come fixed and her quaility of life and life expectancy will be poor." quote from her doctor. It stinks, not really great options we have here.
We also talked about artery banding. Where they basically band the pulmonary artery so only so much blood can go through it into the lungs. This protects the lungs from high pressures, But because Haley has the holes if the blue blood couldnt go into her lungs it would be forced over to the right side and she would become blue, meaning she would have unoxygenated blood going out into her body. The doctors have talked about it but right now see no clear benefit.
We talked about a transplant, which is last resort, a probably not type of thing. Haley would need a heart and lung transplant and these really suck, the shelf life is about 3.5 years, at that point they fail and you either die or you get "lucky" and get another translplant.
So then we have the problem of the PDA that needs to be fixed. One option is to put in a stint (doing a cardiac catheter) in her aorta, but this could push the plug the other way and obstruct her pulmonary artery, it would need to be eventually fixed as she grew...reasons obvious...And the stint would make surgery to fix it much more difficult. but the plus would be a less risky surgery. The other option is to just go in and fix it permenatly the first time. So it is not open heart surgery but they would need to open her chest the same way.
The doctor brought up genetic testing which I have been talking about since she was born. See here is my issue, when Haley was born she didnt have function in one side of her lower lip. Ok so doc told me it was a pinched nerve, it will go away, bells palsy, marginal mandibular nerve palsy, asymmetric crying faces. But really they had no clue and decided they didnt really care. So I googled it, I found out that the muscle in her lower lip is missing, that goes together with the fact that her left ear sticks out way more then the right. Now the lip and ear are formed at the same time as your kidneys and heart.....if there is something wrong with one of those you NEED to get the other things checked out. I brought this up to the doctor, he didnt care and said she is fine and I shouldnt worry or google too much. I fired that doctor shortly after this. I was an idiot and didnt fight hard enough and follow my gut. Actually I swear I did and even though her doctor told me basically I was silly to want to take her to a cardiologist, I swear I did it any way. I brought her and the cardiologist we saw only listened to her heart and said no she is fine. I asked is there any other test we could do to test her heart. He said no she sounds fine. I left and that was the end, that is when I still thought doctors always knew what they were talking about, I know better now.
Well I have zero records from this visit, I only have a name hand written on her regular doctors records stating I saw Dr. Dumbass with a date. Problem is my insurance doesnt show I ever went and saw a cardiologist. and I have had the same insurance since before then. Anyway back to genetic testing.
I told the doctors at the beginning of all of this that there is a syndrome that is exactly what haley has. They told me there is a syndrome for everything. So now 8 months later they are bringing it up again, asking have I ever thought of genetic testing. Yes, yes I have. Either way this info may help and it may not. They are still deciding whether or not it is necessary to do the testing.
At the end of the appt, we came to the conclusion of it will be one or two more weeks until we have all the info we need to make an informed decision.

Thats it. Thank you Jesus for this day and every day you give us!

Prayers also for a phriend. Her name is Molly and she is 7. She has PH and is with her family tonight, they have called in hospice care. Prayers for comfort and peace for Molly and also her family as she will be going Home soon.

Thank you to everyone who still checks in and reads this, it means alot to me to know you have either joined us or you have stuck with us, this journey is long and difficult, so thank you!